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Friday, August 3, 2007

When I first began these last few posts about my youngest daughter, Lindsay's, brain cancer I had no idea how difficult these posts would be. Even though it has been 17 years since we began this journey with Lindsay, emotionally it feels like only yesterday.

I have no intentions of telling Lindsay's entire story here, only of sharing enough for people to understand the dramatic influence these events have had upon our lives and consequently my dream of breeding Arabian horses.

Lindsay's therapy in rehab seemed to be moving at a snail's pace. I have no idea how it was progressing as far as the doctors were concerned. My only frame of reference was my child and her frustration level at being trapped inside an uncooperative body and also by now she was manifesting some symptoms of brain damage that affected her ability to learn.

Somewhere near the end of June, Lindsay was able to dress and feed herself although due to the chemotherapy and radiation she was on tube feedings. She could speak in short very limited sentences but was capable of expressing her needs. She was also able to walk with support (from a person or a wall) for about twenty steps.

Even though she still required 24 hour a day care and was a long way from normal, the doctors in rehab decided it was time to send Lindsay home. Her charge nurse and I were both very upset by the decision. Both of us felt that Lindsay could still benefit greatly by the programs there. But the doctors in charge felt that I was a parent in denial and that I just needed to accept that this was the most Lindsay could or would ever do. Boy were they wrong!

Even though the surgeon believed that Lindsay would recover more than this, he carried no weight with the rehab staff. They actually said to me that surgeon's are prima donnas with inflated egos and are unwilling to see that their surgeries don't turn out any better than they do.In no uncertain terms they stated that Dr Berger was also in denial!

To say I was furious, would be a gross understatement! But I was unable to block their decision. Arrangements were made closer to home for the appropriate therapies for Lindsay even though she had to go onto waiting lists and hope for a space to get into any of them. Lindsay was sent home.

I was Lindsay's 24 hour a day care. Dave's insurance through work did not allow for such care and we were not eligible for any programs that might assist with such care.

We live in an older double wide mobile with steps up into it. It also has small rooms and narrow hallways. While the steps were a challenge with Lindsay being in a wheelchair, the small rooms and narrow hallways actually worked out well. Lindsay could get from room to room by supporting herself with the walls. Other than the first week or so, I don't think Lindsay ever did use the wheelchair in the house.

Of course, the whole time we were dealing with trying to rehab Lindsay on our own at home, we were still dealing with her continuing chemotherapy and its ramifications. In all it was almost 5 years before we would come out the other end of this experience.

During that time, Lindsay was hospitalized multiple times for life threatening complications from her chemotherapy. She had appendicitis and had to have surgery. She was returned to Children's on numerous occasions for blood transfusions. Lindsay's pony died (during Daffodil Spring Arabian Horse Show the following year) thankfully we had Mark, the Arabian gelding, who took over as her therapy horse. And the list goes on.

But at the end of five years, we finally said goodbye to the last of the medical interference in our lives. Lindsay was finally off of tube feedings. She had developed an artificial form of anorexia due to the chemotherapy so getting her to eat on her own had been our final hurdle.

Lindsay does have some problems from the brain damage she suffered. However, she has come so much farther than anyone in rehab at Children's Hospital ever expected. It was a long tough road. I did and still do a lot of poking and prodding insisting she can continue to improve as long as she tries.

During that first year we were at Ronald McDonald House, Lindsay was the only child to survive with any form of cancer. Many children with cancers with high success rates died while Lindsay just kept plugging along at life. She'd probably be the first one to tell you she didn't dare die, because I'd have killed her.

Lindsay is a walking miracle. She is one of the first children to ever survive her diagnosis of medulla blastoma. The surgeon who removed her stomach tube at the end of the five years told me that the survival rate for her cancer was considered to be 4%.

Finally after five long hard years, we were going to be getting on with our lives and I was going to get back to my dream of breeding Arabian horses.

I guess I should have clarified on the five years. Lindsay's whole course of chemotherapy took about three years with the delays because her blood counts were too low to continue. It was at least another six months after that before Lindsay quit vomitting and was able to eat regular food. But it was two more years after that before we were through with the tube feedings (because of the artifical anorexia). She was also on growth hormone treatments until about that time (which were useless).

I have no idea how long treatment or for that matter what type of treatment is done for this particular cancer takes today. I just know the survival rate for it is now very good.

So from beginning to end it was a little over 5 years before we no longer had the emotional and huge financial drain anymore.

Thank you so much for writing about this experience in your life. I appreciate hearing things from the patient and the patient's family's perspectives, as I hope it will make me a better physician in the future. In medical school, I don't think we spend any time formally learning about how to talk with the family of patients. I think we have to be very proactive in learning these skills, and search for a mentor during our clinical years and ask a lot of questions.

Wow MiKael, I know how hard that must have been to delve into again, thanks for sharing it with us.

I know what it is like to have to care for someone who is totally dependent on someone else for every part of their life, so you have my utmost respect.

Hope all is well with you. Thanks for your visits, you are always in my thoughts, I just hope things will slow down soon so that I can get caught up with everyone, I miss the daily banter back and forth!! (((Hugs))))

MiKaela, my hat's off to you! What an experience to live through. I've always found that writing helps to quiet inward turmoil, even years later. Hope this has helped you experience more peace.

I completely understand what you're saying about doctors; they told my grandmother that my grandfather would be nothing more than a breathing vegetable the rest of his life after his stroke. While he never fully recovered, she was able to return to work and he could get around the house with his cane, make himself lunch and such.